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Data Release Guidelines & Policy

The Massachusetts HIV/AIDS Surveillance Program collects, analyzes and disseminates statistics on Center for Disease Control and Prevention (CDC)- defined HIV/AIDS cases diagnosed among Massachusetts residents. This data is available to the general public. Following are some helpful tips and guidelines that should help in better access to, and interpretation of this data.

Confidentiality Policies

Information on HIV/AIDS cases is released in compliance with our confidentiality policies. NO PATIENT IDENTIFYING INFORMATION SUCH AS NAME, ADDRESS, DATE OF BIRTH IS EVER RELEASED. Information is released in aggregates only. Furthermore, in order to protect the privacy and confidentiality of our information, if the population of any geographic location in Massachusetts is less than 50,000, and the total number of HIV/AIDS cases are less than five, then the data is not stratified by variables such as sex, race or risk of HIV transmission. Also, if the total number of HIV/AIDS cases in any of these groups is less than five, then that information is not released.

Data Requests

Our program routinely publishes several reports and statistics on HIV/AIDS Cases in Massachusetts. Please check our list of publications and reports to see if they have the information that you need. You can access our "List of Publications and Reports" on our web-site or by calling our office. If you need additional information, you may contact us, Monday - Friday, 9 AM - 5 PM. Data requests can be made in writing, email, by fax or by telephone.

Please contact the HIV/Surveillance Program @ (617) 983-6560. If you are faxing or mailing your data request, please write clearly as to what are your data requirements, your phone and fax number and your mailing address to which the information could be mailed out.

The Massachusetts HIV/AID Surveillance Program has information on HIV/AIDS Cases among Massachusetts residents only. For national statistics on HIV/AIDS cases, please call CDC National AIDS Clearinghouse at 1-800-458-5231.

For information on HIV/AIDS-related programs or policies such as prevention and education, counseling and testing, funding and assistance, please call the HIV/AIDS Bureau of the Massachusetts Department of Public Health, at (617) 624-5300.

About the Data

Statistics on HIV/AIDS cases in Massachusetts is provided to our program by medical providers on the HIV/AIDS Case Report forms developed by the Center for Disease Control and Prevention (CDC). Currently, in accordance with the CDC's specifications, information on 'Race/ethnicity' is classified as 'WHITE', 'BLACK', 'HISPANIC', 'ASIAN/PACIFIC ISLANDER', 'AMERICAN INDIAN', and 'NOT SPECIFIED'. This classification of ''Race/ethnicity' does not capture information on individuals who do not identify themselves as one of the above mentioned groups; therefore, currently, our program does NOT have information on HIV/AIDS cases among such individuals. Our program, however, does have some limited information on the 'Country of Birth or Origin' for individuals who identify their country of birth or origin to be other than US. This data is based upon information provided by such individuals to their medical providers who in turn report it to us on HIV/AIDS Case Report forms.

Different institutions and agencies conduct HIV/AIDS statistical analyses in different ways. Therefore, please be careful in comparing data from different sources. For example, Massachusetts HIV/AIDS Surveillance Program generally analyzes trends in HIV/AIDS cases by their 'Year of Diagnosis' i.e. the year in which an HIV case first met the CDC definition of an HIV/AIDS case. Other sources, like the CDC, release statistics on HIV/AIDS cases by their 'Year of Report' i.e. the year in which an HIV/AIDS case was reported to the surveillance agencies, regardless of the year when the HIV/AIDS case was diagnosed.

Also, statistics on HIV/AIDS cases among Massachusetts residents are continually updated; please exercise due caution in comparing data released at different time-periods (e.g. Data released through our Monthly Report is titled with the month and year when that report was released; e.g. 'Data As of January, 2007').

The number of HIV/AIDS cases in a Massachusetts city/town is counted based upon the city/town where the person was residing at the time of his/her HIV/AIDS diagnosis. The cases whose residence at the time of their HIV/AIDS diagnosis was a correctional facility, are reported separately as "HIV/AIDS Cases among Prisoners".

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